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My Painful Stumble from Furious to Fit

By Leah Tyler

One fateful day in 2011, I stood before my bathroom mirror and watched myself descend into a full-fledged rage attack. My mere 34 years of existence had hit me pretty hard.

I was 100 pounds overweight, riddled
with pain, ravaged by illness, and utterly
incapable of participating in my own life.

Although I had narrowly escaped death and was technically lucky to be alive, it sure didn’t feel that way. I had absolutely no idea how to pick up the shattered pieces of my reality and move forward, but knew I had to do something to curtail the uncontrollable fury gobbling up my sanity. My at-home yoga practice clearly wasn’t doing the trick, so I decided to start running.

But that’s the most misleading way to phrase it. Because I was so out of shape and in so much pain, all I could do was shuffle at a fast trot for 5 out of every 90 steps. Literally. So that’s what I did, every other day when I walked my dogs. After a few weeks, I was trotting ten steps and walking eighty. Over time I kept whittling away the ratio, until the day finally came when I was running a block at a time. It took many months, and my efforts were rewarded with ungodly amounts of pain. I’d hobble up the stairs, gulp down extra pain meds, and lay around moaning about how bad I hurt. But my rage was tempered, and I even lost a little weight, so my progress kept me going.

Years before, in the early days of my journey with chronic illness, I started researching nutrition. This inspired me to try pretty much every diet, cleanse, potion, philosophy, and ideology imaginable claiming to offer the true key to health. While none of them fixed me, the more I shunned preservatives, chemicals, refined, and processed, the better I felt. Marginally. I delved deeper into my quest to understand the human body’s relationship with food and uncovered the startling truth about the dangers of yo-yo
dieting.

For the first time in my life it became
urgently clear whatever modifications
I decided to implement had to be forever.

Top 5 Tips to Getting a Better Night’s Sleep

By Kristen Lavoie, Marketing and Promotions

As a fellow chronic pain patient, I am passionate about helping others in pain and sharing helpful tips whenever possible. Ironically enough, I’ve also worked in the pain medicine field alongside numerous high profile pain management physicians for the last 5 years—so I’m very familiar with not only the standard treatments and therapies for pain, but many tips and tricks that only come with trial and error as well. Whenever I get the chance to blog, I hope to share lots of helpful tidbits that will hopefully be of value to the pain community. So here’s a great one to start with: my top five recommendations for helping you get some zzzzs.

Invest in the right mattress for you.
People often underestimate this factor—but this is VITAL. A firmer mattress is better for back pain, because it helps support proper alignment of the spine. I once bought a Sealy brand firm mattress that has proven to be the best I’ve ever had, but I must say, Sleep Number mattresses might be worth looking into, since my husband and I recently bought one and we both like to adjust our sides to our own settings.

Get proper pillows.It is crucial to make sure your pillow is the right height. Your shoulders and neck need to be supported and aligned so that your spine is straight. Chiropractors and osteopathic doctors will often recommend a cervical contour pillow, like this one, that you can find at Target, Walmart, etc.

Try using a body pillow.
If you’re a side sleeper, something like this might help your comfort level while sleeping. Tucking the pillow between the knees can reduce back pain by relieving pressure from the lower back and wrapping your arms around it takes pressure off your shoulders. If you’re a back sleeper, try a wedge pillow under your knees, or use a regular pillow to reduce the gap between your lower back and the bed. All of these tips are aimed at aligning your spine while you sleep to alleviate pain while trying to fall asleep and the stiffness you might be feeling in the morning.

Check with your doctor about pain-relieving creams, patches or devices.

I like Lidocaine ointment, Topricin Pain Relief and Healing Cream or an anti-inflammatory pain patch. For tight muscles, ThermaCare heat wraps help me quite a bit, and they’re available at pharmacies and grocery stores everywhere. Sometimes I apply one before I go to bed or if I wake up with pain in the night. Also, you might ask your doctor about a portable TENS unit, which is an electrical nerve stimulation device to reduce pain.

Before bed, take a hot shower, bath or dip in the hot tub.

Not only does this help ease tension and relax muscles, but it can promote sleepiness as well. Infusing a hot bath with aromatherapy oils and/or Epsom salt can decrease inflammation and release the stress of the day. Epsom salt can be purchased inexpensively at your local pharmacy or grocery store.

Vulvodynia: A Real Pain in the Vagina

By Jessie Carr

In my 18 years of battling various chronic illnesses, with all the terrible symptoms and the terrible doctors and the even more terrible social and emotional challenges of being a “sick” person, nothing has been so debilitating as my ongoing war withvulvodynia.

In the early days of my diagnosis, when I turned to the Internet for information and a glimmer of hope (as I am sure you, Dear Reader, are also doing), a sentence like that would have moved me to yet another round of tears. But I will not mince words.

I owe that to my fellow sufferers who live in a world where the utterance of the word “vagina” is often met with snickers or blushing or disgust, when of course the vagina is just another body part—an important one at that—and sometimes it gets sick, too.

I make this ominous proclamation to
underline the gravity of this condition
and to validate your suffering.

But I will follow it up with an equally important proclamation: this condition is manageable, and you will be able to enjoy your life again one day. I won’t lie: it may not be easy. But it will happen.
So, altogether now, let’s do this.Read More Vulvodynia: A Real Pain in the Vagina

How Self-Empowered Pain Management Set Me Free

By Laura Morris

…empowering ourselves to partner with our doctors and pain management programs, as well as seek out alternative modalities of wellness, will bring greater benefits long term in our overall quality of life.

As a fibromyalgia patient for more than 30 years, I put most of my trust in Western medical doctors to take care of me, at least in the beginning. That’s what we do because insured health care is set up that way. It’s also what’s drummed into us growing up, and I want to make clear at the outset of this article, that doctors do their very best to help us get well with the information they have been taught to use as scientists.

We get sick, and it’s up to those with the degrees and all the scientific information to create treatment plans that generate the best possible outcome with the data they can gather. However, I have come to believe through many years of sometimes agonizing experience and plenty of research, that empowering ourselves to partner with our doctors and pain management programs, as well as seek out alternative modalities of wellness, will bring greater benefits long term in our overall quality of life.

Science Fiction of the Past Is Now Modern Technology

By Bethany Smeltzer, Marketing

When we read books written from the 1980s, the authors were visionaries when describing technology that hadn’t been invented yet. But now we can turn around and see that the technology that was mere fiction back then is coming to life now.

In Terminator robots having artificial intelligence was once fantasy and, quite frankly, a horror for many people. The idea that a robot could think, learn and act on its own is actually coming to life. Japan has created robots to act as home nurses to help caregivers, making lifting and heavy duty tasks easier. IBM has recently created a computer that learns called Watson, which is being trained by Memorial Sloan Kettering (MSK) Cancer Center and “…suggests tailored treatment options—along with supporting evidence—to clinicians by extracting key information from each patient’s health record and cross-referencing that with MSK expertise, curated texts and case histories” (IBM: Watson for Oncology). They call him Dr. Watson due to the fact that he can answer questions about leukemia now.

Back to the Future has flying cars and, if you are a Disney fan, Zeon (along with many others) has self-driving cars. Both are being created in our lifetime. Companies are in a fight to the finish line to be the first. Now, would I trust myself to fly a car? No, I wouldn’t even trust my mom and dad in one of those! Sorry, I love you, but no. However, a self-driving car opens the doors to so many people who have been isolated due to their illness or condition. People who either couldn’t drive due to a diagnosis or no longer could drive because something happened (car accident, amputation, etc.) now could have the world opened up to them. A computerized car offers those who couldn’t get a job due to transportation issues the chance to have a job, which leads to income, which then leads to money and better care.

Technology is changing. The imagination of those over 20 years ago is finally being realized. If it’s dreamed today, what could happen tomorrow?

Top 10 Things NOT to Say to Someone Living with Chronic Pain

By Melinda Malott

I came of age during the Letterman years. I was working as a registered nurse on the 3-11 shift and I would come home just in time for Dave’s top ten list. Most of them left me howling and helped dissolve any leftover stress from the evening shift.

Did I ever think I would be penning my own top 10 list? Of course not! Did I ever think I would be the “patient” for an extended period of time? No way! So it’s with a bittersweet well of emotion that I pen this list.

Take this list and print it and give it to your friends and family; get it posted in
newsletters, bulletins or any place
that might catch someone’s eye.

[Click the image below to enlarge, right click and “Save Image As” to download to your system.]
I’m not a particularly overdramatic or oversensitive kind of girl, but honestly the things that have been said to me over the past eight years in regard to my illness (CFIDS/fibromyalgia) have blown me away. Honestly, people don’t think. I know that some people just don’t know what to say, so they fumble and sometimes a gold nugget emerges, but mostly a lump of coal.

So with that said here is my top ten list (thanks David Letterman) of things NOT to say to someone with chronic pain.

A Vision for the Community Pain Center

The vision for the Community Pain Center, a revolutionary destination website created for the chronic pain community, began 20 years ago when the CEO, Lynne Kennedy Matallana, was first diagnosed with fibromyalgia (FM). She had been bedridden for two years after surgery to treat endometriosis. Wracked with pain and fatigue, she saw 37 doctors before finally receiving an FM diagnosis. With this new information, Lynne set out on a quest to find out as much about her condition as possible, but discovered that little information and support was available.

This led her to focus what little energy she had on creating a solution to this problem. By 1997, she and Karen Lee Richards, a fellow FM sufferer Lynne met in an online chat room, formed the National Fibromyalgia Association (NFA). Guided by the mission statement: “To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia,” the NFA started out in a makeshift office in Lynne’s attic and over the years grew to be the most recognized and influential FM organization. The NFA directly assists approximately 1.2 million people each year in developing skills to regain control of their lives, reduce isolation, and restore hope.

Lynne couldn’t help but think that there had to be more she could do to help people
suffering with fibromyalgia and other chronic pain conditions.

An Attitude of Gratitude

By Laura Walker, Content Development Director

When I responded to the job posting for a “new online health care company” I had no idea what to expect, and then I received an email back with more information about the company. So I Googled the name of the CEO and discovered that she founded the National Fibromyalgia Association. My heart began to beat faster as I read more about Lynne Matallana and her new project, the Community Pain Center, I knew right then that this was my dream job and I was going to get it. I could see how all my past experiences—everything I had been through—was for a purpose: to help others with chronic pain.

You see, I was diagnosed with fibromyalgia in 2011. In addition to anxiety, depression, and feeling fatigued all the time, I had been experiencing an intense burning sensation in the backs of my legs and buttocks that wouldn’t go away. Then my right arm would periodically go numb and my neck and right shoulder became extremely tense and hurt like I had torn muscles. The doctor couldn’t find any damage, so he sent me to a massage therapist to loosen the tension. I had regular massage every week for a few months and still didn’t notice improvement. I eliminated processed foods from my diet and tried to exercise, but found that it just created more pain.

After several visits over the course of a year, my doctor asked me several questions about my physical abilities, mental/emotional state, pain, sleep, and stiffness, and then applied pressure to the 18 tender points (I was sensitive to 16), and then just like that, with a sympathetic smile, he said, “fibromyalgia.” He explained that fibro is a disorder of the central nervous system and how it processes pain signals. He even drew me a picture, pointing out the difference between normal and fibro. I was devastated to hear that there is no cure and all we could do is manage symptoms.

I began physical therapy to ease me into a simple exercise routine, which helped reduce the pain. My physical therapists also performed myofascial release, which relaxed my muscles and improved my poor circulation. Stretching throughout the day has also been somewhat beneficial, and eliminating processed foods and sugar has reduced my inflammation.

I also tried acupuncture twice a week for a few months, but found that the only relief it gave me was from menstrual cramps. My doctor put me on Cymbalta, which did not have good results for me. My depression only got worse. Almost everything I have tried has only provided me with a little relief. What provides me with the most relief is not focusing on myself.

So, I’ve grown accustomed to the fact that I always have pain. I accept that. And now I can continue to do what makes my heart sing and that is to help others. When I am in the service of others, my mind doesn’t dwell on me and my struggles. When I am more concerned about what I can bring to the world rather than what I can get from it, I hardly notice the pain. And this, my friends, is why developing content for the Community Pain Center is my dream job.

Not only do I get to spend my day planning and creating the most relevant and informative content that will help our members, but I get to be part of this community of people just like me, who know what it’s like to live with pain every day, yet persevere, so that we can make a difference in the way pain is perceived and treated. I am truly grateful for my pain today because it gives me the opportunity to be part of this amazing community.

A Caregiver’s Job: Assist, Support,
and Love

By Joanne F. Kennedy

According to the National Alliance for Caregiving and AARP, 29% of the U.S. adult population (65.7 million) are caregivers to someone with an illness, disability or who is aged. Women make up 66% of the caregiving population with the average age of female caregivers being 48. Millions of people are afflicted by conditions such as fibromyalgia, chronic fatigue and immune dysfunction syndrome, lupus, multiple sclerosis, Parkinson’s, and Alzheimer’s, leaving them reliant upon the care and assistance of a family member. The difficulties of living with chronic illness are numerous, and the demands of caring for a chronically ill family member can be challenging.

“I can’t feel the bottom of my feet,” Jack said. He had been standing on a ladder, painting our back porch. When he climbed down and came into the house with a disturbed expression on his face I could tell that he was concerned.

I didn’t think at that time that something could be wrong. I reminded him that, as usual, he was working in a pair of leather moccasins with soft soles that didn’t provide enough support. He was 38 years old, chairman of the science department at a nearby high school. Life was normal and he had a routine: yard work, washing the car, tutoring our children. He was an attentive father and husband.Then I remembered that for a while, about three years prior to this, he pretended to be devoted to watching football on TV every weekend, but actually, he was on the couch sleeping. And then there was a period of time when I had to hire someone to do a major yard cleanup because he was unable to keep up with the maintenance. I had forgotten these times because they didn’t seem related to one other.

It was another three years when it became clear that he could no longer work because the numbness in his feet had moved up his legs. He was diagnosed with a non-typical multiple sclerosis. At that time, I was determined that this would not change our family. I thought I could handle it all on my own—his illness, the kids, the house, my job. I wanted so much to be able to do it all. But I couldn’t.Read More A Caregiver’s Job: Assist, Support, and Love

Anything Is Possible

By Lynne Matallana, President & CEO

In 1995, my life had become a practice of patience. I would tell myself, “I can stand this pain for two more months,” and I would imagine that during that time I would find the reason for my pain and a way to make it go away. For the next two months I would practice living life in a very structured and predictable way. I would try to sleep as much and as late as possible (which wasn’t easy!) and then I would begin my day of routine. Each day was the same…I had found a few distractions that I could practice (walking to the mail box once a day, watch an old movie that was upbeat and I didn’t have to put any effort into following the simple story line; try to do stretching exercises on a yoga mat, sit in a hot bath with herbs and mineral salts, and see how many times I could walk from my living room to my dining room–back and forth)…all of which would help the day pass a little more quickly, until it was time to go to bed and then start the whole cycle over again the next day.

Every couple of weeks the routine was broken by a trip to see a new doctor and the visit was proceeded by a day of feeling optimistic that this time I was going to meet the person who could make my life return to normal.

As I would sit in the exam room waiting for the doctor, I would practice to myself the explanation I would present when the doctor would finally show up and ask me for the reason I was there.

I would begin telling my story, putting up a brave front, sharing my symptoms and my current treatment strategy…but would usually end up in tears, trying to get the doctor to understand how much pain I was in and how desperate I was for his/her help! Most of the time the doctor’s reaction was like seeing a deer in the headlights. I knew they saw a healthy looking woman, who seemed to not be coping very well, overreacting to something they didn’t understand. This disconnect would make my body hurt even more and my emotional state go from bad to worse.

I would ask myself, “Why did I get my hopes up?” As I walked out of the doctor’s office with a piece of paper that had the name and number of a local psychologist, I would tell myself, “You aren’t crazy! Your pain is real. Someone, someday will have the answer. Try to stay positive and have faith. This is just a temporary situation. Have patience, and remember…you just have to hang in there for two more months. They have to have answers for you by then!”

It took more than two months for me to get a diagnosis of fibromyalgia, but when I finally found the doctor who knew what was wrong with me and told me with time I would get better…I told myself, “I’m proud of you! You held onto hope and never stopped believing that anything is possible.”